In a world that
has fallen in the deepest financial crisis, some are still being
creative in order to subsist for a while recycling ideas that have
been tried other places with not much success. It gets much more
worrying when these projects are proposed in such a small Nation
like the Faroe Island, where the people and the economy are so much
more vulnerable to risky ideas that sound very interesting to the
inexpert, at the same time that experts caution seriously against
such proposals.

Science and
business are a dangerous mix that makes scientific research risky
and not reliable. One should be suspicious of the motives behind,
when business comes to a little country asking for the possibility
to let their citizens be donors in a joint venture with arguments
that sound altruistic, though are not based on facts but on promises
of immediate benefits of a scientific research the results of which
might be decades away.

The markets were told some weeks
ago, that the Faroe Islands would be the first to sequence an entire
Nation[1]
,
[2]. The
population is genetically fairly homogenous. Data from the project,
known as FarGen, will support research and personalised medicine.
The project will start with 100 people selected at random, and
should cover the entire population in around five years2.1.·It
has been said that the Faroese people finally are ready to give
their DNA to this genome sequencing project unlike in 1999. From
speeches and interviews one can read: Like our Minister of Health I find the
FarGen project very promising. I was Minister of Health in 1999 when
there was an effort to start genetic research in the Faroes, at that
time we and the Faroese people certainly were not ready[3], when
the Icelandic company DeCode approached us to use us
as a check population to their own projects.. but the Faroese
political system backed out of the process. The Faroese population
at that time was probably not ready for a process like that…[4]

Some are very confident
that the Faroese population knows about the project, but I have
asked all the people I have been meeting at primary, secondary and
tertiary schools, in the supermarket, at family and friends
reunions, ever since I got a massage where I was told of this
project by a Canadian friend, and I have still not met anybody who
knows anything. I have asked teachers, some of them
even biologists, I have asked nurses, I have asked bank employees, I
have asked factory workers and fishers, and I have asked my pupils.
I have even asked newly elected politicians and political active
citizens of the Faroe Islands. Why are the Ministers and proponents
of the project so sure that the people agree with the idea? And why
does people not know what is being projected with their own genomes
though the news is all over the internet? What are they waiting for?
I don’t agree if they think that because the Faroese people have
heard a lot about the CTD problem, and they wish that this and other
genetic diseases that are more common among our population were
subjected to public research funding, they automatically agree with
having their genomes sequenced and attached to their health files.
It might be significant to point out that, though some genetic
diseases are more frequent here than in other countries, life
expectancy is even higher than in Denmark[5].
Sharing half of my genome with the rest of the people of this
country, I don’t like the way we are presented to the world by the
scientific community. We seem to be in the focus only when it comes
to bad genes or poisoning from PCBs, DDT and mercury in our
traditional food. That is the way we are presented all too often.
Our biological and psychological samples have given material to many
scientific articles and authorships, and now they are coming for
more.

The Minister of
Trade and Industry showed his fascination to this project on the 17
February 2011 during the FarGen workshop when he welcomed the
participants calling the meeting as a certainly special
occasion to be given the opportunity to entertain so many high
profiled international researchers, who have spent the whole day
debating research opportunities based on the genes of the Faroese
population.
He said
that he was confident that given the potential hidden in our
most personal and precious resource(meaning our genome),
in the years to come, genetic and biotechnological events will be
part of everyday business in the Faroe Islands.
His thoughts went from the genome of
the Faroese almost immediately to the other less personal and
precious resources, fish and farmed salmon. The Minister described
the Faroe Islands as: a biological and social laboratory
inhabited by 50000 peopleand the place to make
small-but-full-scale experimentsall this in order to
create business opportunities within genetics and biotech
nurturing entrepreneurship within the knowledge industries.
He mentioned a law in the making to
enable us to build a science and innovation park in a
public-private joint effort. The facilities will be open to both
public and private research institutions and also to start-up
entrepreneurs working in the fields of biotech, genetics,
bioinformatics, etc[6].
Being a scientist that has worked in public
health for several years, as a molecular biologist in one of the
countries that has embraced biotechnology with the same fanaticism
shown in this speech, I really find this statements quite disturbing
and worrying.

A day after the
Faroese Minister expressed his excitement towards the promising
opportunities he could envisage from putting the sequence of the
Faroese most personal and precious resource in the hands of
entrepreneurial businesses within the knowledge industries, more
cautious and truly expert voices expressed their concern in an
article published in Science Magazine warning against the new
genomic bubble on the 10th anniversary of the Human
Genome Project[7].
Evans et al. say:

Unrealistic
expectations and uncritical translation of genetic discoveries may
undermine other promising approaches to preventing disease and
improving health….

…But claims
of near-term applications are too often unrealistic and ultimately
counterproductive. From the South Sea and dot-com “bubbles” to the
ongoing housing market crisis, the world has seen its share of
inflated expectations and attendant dangers. (Here I would
refer to cases nearer the Faroe Islands, such as Stein Bagger[8]
and the Iceland’s business Vikings[9])
Science is immune to neither. (Fx the Milena Penkowa case[10]).
If we fail to evaluate the considerable promise of genomics through
a realistic lens, exaggerated expectations will undermine its
legitimacy, threaten its sustainability, and result in misallocation
of resources. Fueling unrealistic expectations for predictive
genetic testing and uncritical translation of discoveries may also
distract our gaze from other promising approaches to preventing
disease and improving health.

Their
applicability to patient care shows little promise; studies
demonstrate that even combining dozens of risk (genetic) markers provides little clinically
meaningful information. In the public health realm, the prospect of
effectively stratifying populations as high or low risk, thereby
guiding screening, is equally dismal. Given the multifactorial
nature of common diseases and the weak predictive properties of
genetic-risk alleles, the probability of misclassifying individuals
as high or low risk is likely too great to make such an approach
feasible in the general population for guiding such things as
mammography or colorectal cancer screening.

…The public,
researchers, and clinicians frequently fail to appreciate that the
history of medicine is strewn with ideas once thought promising that
did not pan out when scrutinized through the lens of evidence based
medicine). Hormone replacement therapy, prostate-specific antigen
screening, peri–myocardial infarction lidocaine, and many other good
ideas, when prematurely implemented, created bubbles of expectation
and investment

Nevertheless, the discourse
promises that the genome database will enable doctors to look up the
patient’s genetic material and e.g. check whether a certain drug
will have side effects, or whether it is right to provide preventive
treatment for a hereditary disease[11],
as if it was a fact, and this is deceiving. This is contended by
professor of medical ethics and health policy at Penn's Perelman
School of Medicine, Dr. Ezekiel J. Emanuel who predicts that the
challenges are very great from the economic and efficiency point of
views also:

“Before we
buy into this, we need to remember that almost every evaluation of
what drives health care costs up points to new technologies… We need
to be skeptical. We need to see the data before people buy into the
idea that personalized medicine is going to produce cost savings and
be so much better for the system… Using genetics is just one more
way of subdividing patients. It's not 'personalized' in that way.
You still have a group of people who are going to be treated in the
same way. And for some people, the treatment will work. For
[others], it will not work…You have to look at the cost of a
screening test over a large group of people. Then you need doctors
to actually adhere to the test results. Then, when you identify a
smaller group of patients to treat, the pivotal question is, how
expensive is the new treatment? You need to add up what you're
saving and what you're spending…You're going to use the drug on ever
fewer people, but then [companies] have to recoup the development
costs and [see] corporate profits. The idea that this is going to be
cheap is a myth. It's going to be very expensive."Professor of Medicine Jason Karlawish argues furthermore:
"As a society, we're going to need to start to think about the
ethical, legal and social implications of this. Frankly, this is
numbers-driven medicine, and there are a lot of for-profit and
proprietary interests at hand in owning the numbers. It's a new
model that presents novel challenges."
[12]

Therefore, the
idea of sequencing the whole population of the Faroe Islands as a
way of providing a better service can be seen more as a misleading
illusion that will add costs to a vulnerable economy rather than as
a vision of a way to improve healthcare and business opportunities.

Evans et al.,
Emanuel and Karlawish are warning against exactly what is being
proposed in the Faroe Islands. After all, why did the Icelandic and
the Estonian genomic projects, which were not much different from
the one proposed in the Faroe Islands, fail to deliver the big
businesses they were supposed to be?[13]
,
[14]

Besides the
promises of a better health care system, the discourse from the
speech provided by the Minister of Trade and Industry addressed to
the scientific community, offering the population of his Islands for
research, has now been taken by some scientists interested in
building a resource for research and exploration of social
challenges and even study social implications, as also Bogi Eliasen,
the Faroese FarGen main lobbyist argues:

”All 50.000
of the islands inhabitants are to be invites to have their genomes
sequenced and linked to their medical records, to tailor health care
to individuals’ DNA and build a resource for research…The ambitious
FarGen project will examine how doctors can use individual patients’
DNA to select the best therapy and to predict and reduce their risk
of developing certain diseases.It
will also explore the social challenges of mass genome sequencing.
These include the logistics of collecting, storing and interpreting
DNA data from a whole population, the consequences for privacy and
insurance, the ethics of sequencing children, and confidential
access for medical research.Bogi Eliasen, the program
manager of the Faroes’ Department of health is in charge and he
said that Faroes’ small population make it ideal to pioneer
comprehensive genomic health care and study its social implications.
The movement is accompanied by school lectures on genomics so that
people would understand what it means, its benefits and its risks…The
isolated population of Faroe Islands will serve as an excellent
research material for testing the implications of the introduction of ‘personalized medicine’ into
the health care system and will indicate the additional knowledge
and skills needed for the medical personnel to meet the new demands[15].

The contradictions in the arguments
are also worrying from the ethical point of view. In order to do the
research that might some day make this hypothetical probability
true, the genomic data of each Faroese citizen should be available
for those who might want to do research on it. And since the idea is
to make genetic research, the data should not be kept so anonymous,
that scientists cannot use it. To do genetic and environmental
research you need to get information about family, age, place,
nutrition, psychology, etc. How can you achieve anonymity in a
country of 50000 people, while providing other data? But it must be
anonymous due to ethical reasons. So I cannot see how the
information contained in the Faroese genomes can be useful to
research in order to be able to design drugs some day or other
scientific aims. It does not make sense. If the sequence is hidden
from everybody in a personal health file it will be meaningless data
because today there is no way you can use this information to cure
diseases you have not researched. And if the sequence is offered to
the scientific community in open databases as the genomes of T.
cruzi, E. coli, M. tuberculosis, Plasmodium spp.
or the universal human genome, or otherwise, there is a high risk
and even a certainty that employers, insurance companies or even a
political system that might criminalize democratic activities in a
future might get these data somehow, and use this against the person
that owns the genome or even their progeny. We must remember that
half of each of our genomes is passed to our children and so on.
Neither can I imagine how the project can be interesting to
businesses if it is kept protected in the patients file. The law
does not address such issues[16]
and even if it did, there is no way to guarantee what politicians
might rule in the future, once the genomes are out there. Very
probably, if a person regrets and wants to retrieve the genome
information from her or his own personal file, there is no guarantee
that this might be possible once it has been digitalized.

What worries me also is that all
this excitement from those who, out of misinformed ignorance,
believe that knowing the sequence of the four letters is a miracle
solution in itself. What about gene regulation or epigenetics, which
are heritable modifications in gene expression not encoded by the
DNA sequence. The epigenetic landscape has grown increasingly
complicated in the past decade[17],
for instance.

Therefore the
arguments lack any sense of reality and criticism. The more we know
about the molecular biology of complex organisms as us, the more
complex it becomes. I cannot see how one can offer people to design
personalised medicine at this stage. Right now, it is only at the
hypothetical level. Years of research must be performed. We can
offer our selves as guinea pigs, but then the people must know the
risks of having their genomic information offered to private or
public research. Politician and lobbyists that might see the project
as job opportunity to themselves and friends or family are blinded
by marketing arguments that have no hold in reality as it is today.
And teaching how the four letters become an amino acid sequence in
the biology class to primary school or high school children will not
bring more knowledge, since molecular biology is not so simple. And
simplifying the knowledge to these levels will only misconstrue
biological true knowledge even more.

Not
least worrying is the fact that Illumina, which is a US company that
is part of the Advisory Board of the FarGen project[18],
12.1* and is supposed
to perform the sequencing, is apparently not in a good financial
shape according the information available in different sites[19]
,
[20]. The US
government has put this company in a rough patch reducing the
funding to academic and research institutes that are a major part of
Illumina’s customer base. And the downward trends seem to
continue for several years and funding restrictions are limiting the
number of newcontracts
awarded to gene sequencers[21].
And it is not only the US that is not providing funding to support
the economy of the company. The EU is not getting better as a source
of funding[22].
Illumina has announced that it will have to cut 200 jobs to reduce
costs[23].,
[24] Furthermore,
Illumina’s genotyping platform 610 Quad array produced errors in the
identification of the SNPs genetic markers and was, in part,
responsible for the retracting of a high profile study on genetic
patterns tied to old age from not less than the scientific magazine
Science. The article had erroneously reported 150 genetic variations
that could be used to predict whether the person was genetically
inclined to see their 100th birthday. Soon after the
paper was published by Science, the researchers learned that the
Illumina chip had been shown in unpublished studies by other
investigators to produce incorrect results[25]
,
[26].

While
the US and EU are cutting funding the Faroese government might be
stepping in to help the financial situation of this company. And it
might have helped Illumina in getting Siemens or Roche or other
transnational corporations interested in a project, and making the
market believe that the company is expanding to the transnational
level, since its value in the stock markets were risen on November 4th
2011[27].
But it only helped for a while. Investors are more cautious today
than they were during other bubbles.[28][29]
I hope the Faroese government is more careful with what they decide
to do with the money from the taxes we pay and the planned plea to
Denmark to increase the block grant for 2012. This kind of business
could most probably not benefit the Faroese people’s health system,
but might even impoverish it due to increased debt and misallocation
of financial resources, that might be take from other sectors in
order to support an illusion.. The project needs about 300.000.000
Faroese Kr. to begin with. And since Illumina needs to work with
scientific groups that count on public funding, they will not
provide funding to the project but will be paid, in stead, to do
their job. The other Institution represented in the Advisory Board,
the EMBL-EBI, gets funding itself that is less than the amount
needed to start the FarGen project. The EMBL-EBI received €40
million in internal and external funding for 2010[30].
It is difficult to see any other source of funding than the Faroese
state.

Anyway, we should be able to get an
explanation about how this amount is meant to be used exactly and
how they calculate the expenses, etc. The National Institute of
Health, in the US, calculate that the fully loaded cost of
sequencing a whole genome for 2012 is U$S 15.000.-[31]
(in Faroese croner it might be about 83.000). On the other hand,
Illumina says that they will lower the price for mapping all the
genes in a single human for research to U$S 4000.-[32].
(in Faroese croner about 23000). If it goes bad, we can add to the
important debt we already have, and end like Iceland and Greece for
pretty much the same reasons7.
And if it is the State that puts the money, neither Illumina nor
FarGen would suffer much. Greed and ignorance have proven to be
dangerous combinations and good substrate to entrepreneurship that
is more based on hope than on reality. We should stop believing in
magic solutions to the crisis, selling whatever can come to our
minds, just because others are willing to put a price on it. It does
not matter if those who want to take advantage of our desperation
for money are either North American, European or members of the
growing economies of the BRICS countries. These are very difficult
times and the belief in bubbles has been the cause of the collapse
of the global financial sectors. We cannot go on letting the taxes
of people be used as part of fantasies and lobby arguments that only
buy entrepreneurs and businesses a little more time to survive until
they either find other politicians in other countries who will fall
for their stories or will simply collapse by their own weight.

Added April 2013 to the original article (from
November 2011)

Recently, from the beginning of year 2013, the Fargen/Illumina/personalized-medicin
lobby is starting to be publicly contested by Faroese medical
doctors such as Shahin Gaini[33],
from the Hospital in Torshavn and MD Eivind Warberg[34],
as well as the Scientific Committee of the Islands. These are the
first critical voices to be heard loudly in the Faroese media
informing the population. The Faroese
Vísindasiðsemisnevndini
(Faroese Scientific Committee that deals with Faroese ethical
issues) had already on April 12th 2012 denied FarGen
authorization to go on with the project of sequencing the whole
population as it was presented[35],[36].
FarGen filed a complaint against the Faroese sovereign decision to
the National Scientific Committee in Denmark. But the Danish
committee has supported the Faroese ethic authorities. It is
symptomatic, that the news of this refusal has not been published
worldwide in the Internet and in English, as did the project itself.
It might seem like a lobby strategy, which will for sure either
ignore or fight desperately against any opposition. One can suppose
that such news might hurt business interests of some corporations.
How this will affect the FarGen summit planned for September 2013,
in Torshavn, remains to be seen. Among the speakers proudly
presented at this international meeting[37],
are
David Bentley from Illumina, UK. Another speaker is DNA pioneer
James Watson[38],
who has been much criticized for his points of view that have been
regarded as racist, sexist and homophobic[39].
Anyway,
the lobby is seemingly thick skinned and blinded by its own vision.

[9]
Iceland's Vikings face a long winterI. Islanders must
create a new future after economy built on massive debt
falls apart
( http://www.guardian.co.uk/world/2009/feb/09/
iceland-economy-credit-crisis )

[39]
Nature News blog, James Watson’s Race Row, 17 Oct 2007:“It is the race aspect of his comments in
interviews that has
so far generated most heat. Regarding Africa he said “all
our
social policies are based on the fact that their
intelligence is
the same as ours – whereas all the testing says not really”…
Watson has previously courted controversy with his views on
women and his musing on the fact it might be possible to
abort homosexual babies. In a recent interview with the,
where he also makes unflattering remarks about fellow
DNA-scientist Rosalind Franklin, he said “Unfair
discrimi
nation exists whether we like it or not; I wouldn’t have
married a gum-chewing vegetarian. Ultimately, we’ll
help the people we discriminate against if we try to
understand more about them; genetics will lead to a
world where there is a sympathy for the underdog.”